The Catholic Church, Experimental Treatments and Charlie Gard

A disturbing statement made by Archbishop Vincenzo Paglia, head of the Vatican’s Pontifical Academy for life, appearing to support the European Court of Human Rights decision to reject Baby Charlie Gard’s parents’ request to go to the US for an experimental treatment for their critically ill son struck a nerve with many Catholics. And although Pope Francis quickly expressed his support for Baby Charlie and his parents shortly after the statement, the ethical issue of experimental treatment remains confusing to many people, Catholic or not.

But what has the Catholic Church really said about experimental means?

VATICAN STATEMENT ON EUTHANASIA

Perhaps the best guidance can be found in the 1980 Vatican Statement on Euthanasia that states:

“If there are no other sufficient remedies, it is permitted, with the patient’s consent, to have recourse to the means provided by the most advanced medical techniques, even if these means are still at the experimental stage and are not without a certain risk. By accepting them, the patient can even show generosity in the service of humanity. – It is also permitted, with the patient’s consent, to interrupt these means, where the results fall short of expectations.” (Emphasis added)

The document further explains that:

But for such a decision to be made, account will have to be taken of the reasonable wishes of the patient and the patient’s family, as also of the advice of the doctors who are specially competent in the matter. The latter may in particular judge that the investment in instruments and personnel is disproportionate to the results foreseen; they may also judge that the techniques applied impose on the patient strain or suffering out of proportion with the benefits which he or she may gain from such techniques. (Emphasis added)

This is a common sense and balanced approach that was not controversial in 1980 and should apply in Baby Charlie Gard’s situation, especially since there is apparently disagreement among doctors about the experimental treatment.

TWO CASES OF EXPERIMENTAL TREATMENT

When I worked with cancer patients in the 1980s and 1990s, I especially remember two patients who decided to try experimental treatments.

One was an older woman whose cancer had spread to her brain. A new drug had been developed that would have to be administered via an access implanted in her head. She desperately wanted to spend more time with her family and was willing to try the drug despite the potential side effects and poor chance that the drug would work.

Initially, the drug did make her worse and she was near death. Three times we called her family to come in because death was imminently expected and she was in a coma.

But she surprised us all by recovering and two years later was still doing well without any recurrence of the cancer. The doctors were astounded.

In another case, a man in his 40s with two sons also decided to be part of a clinical trial of a new drug for his cancer. Some of my colleagues questioned why he would take on such a challenge so I talked with him. He said that he accepted the fact that he was probably going to die of his cancer but he wanted to try the drug not only in the hope that it would benefit him or others like him but also because he wanted his sons to know that he fought to live and be with them.

Although this man died, he left a brave legacy of love to his boys.

CONCLUSION

It is important to understand that medical progress and technological marvels often happen because doctors, patients and family persist in trying.

For example, it wasn’t that long ago that AIDS was considered incurable. Experimental drugs did not work at first but later ones did and now AIDS is no longer an automatic death sentence.

Baby Charlie’s parents worked hard to find a potential treatment and even raised the money to transport their son to the US. The hospital’s decision to usurp the parents and unilaterally remove Baby Charlie’s life support has led to an outpouring of support for Baby Charlie and his parents.

Let us hope that this latest court appeal will reverse the hospital’s decision and help restore the rights of parents reasonably trying to help their children

35 Years after Baby Doe Continued: The Simon Crosier and Charlie Gard Cases

Last week, I wrote about Baby Doe and my daughter Karen and how both were medically discriminated against 35 years ago because they were born with Down Syndrome. The ethical rationale in both cases help set the stage for the legalized assisted suicide/euthanasia we struggle against today.

Unfortunately, the legal right to live for children with disabilities and their parents continue to be under attack today with the cases of Simon Crosier and Charlie Gard.

SIMON CROSIER

Last August, I wrote a blog titled “Parent Power” about the efforts by some legislators in Missouri and Kansas to block the passage of Simon’s Law, a bill that exposed and sought to change the secret futility policies in even some Catholic hospitals that led to the death of Simon Crosier, a baby born with Trisomy 18.

Since that blog, Kansas finally did pass Simon’s Law but in Simon’s home state of Missouri, the bill is still stuck in committee even though new information about the life expectancy and prognosis for such children led to an opinion editorial in the prestigious Journal of the American Medical Association (JAMA) admitting that withholding life-sustaining treatment from babies with Trisomy 13 and 18 was really a value judgment rather than a medical judgment.

The fight for Missouri’s Simon’s Law will continue.

CHARLIE GARD

On June 30, 2017, the parents of 11 month old Charlie Gard lost their appeal to European Court of Human Rights to keep their son with a rare genetic disorder on life support and take him to the US to try an experimental treatment. The appeal was filed after Britain’s Supreme Court decided to let the hospital remove Baby Charlie’s life support, finding that prolonging Charlie’s life was “not in his best interests.”

Baby Charlie has a rare genetic disorder affecting his muscles and brain that has caused  brain damage, seizures and prevents him from breathing on his own.  A neurologist in the US has suggested an experimental nucleoside treatment that might, in theory, offer some benefit although the treatment has not been tried before in a situation like Baby Charlie’s.

On Facebook, Charlie’s parents said that they were “heartbroken” and aghast that the hospital would not even allow them to take their son home to die.

Charlie’s parents have been fighting for months for the right to take their son to the US try this experimental treatment. By the time of the court decision, $1.7 million had been raise through crowdfunding media to cover expenses.

Unlike the Simon Crosier case, the withdrawal of treatment decision by the hospital was not secret.

Apparently under British law, parents do have the right to make decisions about the treatment of their children unless the treatment is not in a child’s “best interests” and usually it is parents who refuse treatment for their children on moral of religious grounds who end up in court.

The Charlie Gard case has caused enormous conflict among ethicists, lawyers and even religious leaders across the world as well as the general public.

However, in the last few days, Baby Charlie and his parents gained support from two important people: Pope Francis and US President Donald J. Trump.

At first, a Vatican official issued a statement on Baby Charlie that “We must do what advances the health of the patient, but we must also accept the limits of medicine and, as stated in paragraph 65 of the Encyclical Evangelium Vitae, avoid aggressive medical procedures that are disproportionate to any expected results or excessively burdensome to the patient or the family.” But a few days later and after much criticism of the first statement, Pope Francis expressed hope that the desire of 10-month-old Charlie Gard’s parents “to accompany and care for their own child to the end” will be respected. (Emphasis added)

Then, after a July 3, 2017 offer by President Trump to help, an unnamed US hospital came forward to offer free treatment to Baby Charlie.

CONCLUSION

On their GoFundMe page , Baby Charlie’s parents wrote:

If Charlie receives this treatment and it does work like the Dr in America thinks, it won’t be just Charlie’s life that has been saved, it will be many more children in the future, who are born with this horrible disease and it will open up other trials on other mitochondrial depletion syndrome’s.

We need to change things and show how determined parents can forge a path for other families encountering similar obstacles. We need to find treatments for incurable diseases. We need to give other people hope. We need to start saving lives.. hopefully starting with Charlie xxx (Emphasis in original)

Over my decades of nursing experience, I have seen people decide to try experimental treatments because they hoped for a cure, improvement or at least to help doctors learn more that may help someone else later.

Sometimes the treatments worked and sometimes they didn’t but after talking with these patients (or parents), I could not help but admire their love, courage, faith and determination.

May God bless Baby Charlie, Baby Simon and their parents!

Baby Doe and Karen-35 Years Later

When I started nursing school 50 years ago, medical ethics was not a course but rather common sense principles incorporated into our education. There was no controversy about not harming patients, integrity, equality of treatment regardless of status, etc.

So, of course, abortion and euthanasia were unacceptable and even thinkable in those days.

I particularly remember one teacher who told us about the hypothetical situation of a child with Down Syndrome whose parents wanted to let their baby die and how we naturally had to put the interests of the child first. This kind of protection for patients was routine both ethically and legally in those days.

In 1982, I remembered that situation when Baby Doe,  a newborn baby boy with an easily correctable hole between his esophagus (food pipe) and trachea (windpipe), was denied this lifesaving surgery by his parents and a judge because he also had Down Syndrome. Six days later, Baby Doe starved and dehydrated to death while his case was being appealed to the Supreme Court after the Indiana Supreme Court ruled 3-1 against saving him.

My husband, a doctor, and I were appalled when we first read about Baby Doe in the newspaper and my husband suggested that we adopt the baby ourselves and pay for the surgery.

I said yes but with some reluctance since I was already pregnant with our third child and our other children were just 5 and 3. But who else was better situated than us to care for a child with a disability who needed surgery?

In the end, we were too late to save Baby Doe. We found out that Baby Doe’s parents had already rejected the many other families who tried to adopt him.

Five months later, I gave birth to my daughter Karen who also happened to have Down Syndrome and a life-threatening condition that needed surgery.  Karen was born with a complete endocardial cushion defect of the heart  that the cardiologist told us was inoperable. We were told to just take her home and our baby would die within 2 weeks to 2 months.

I was heartbroken and cried for 3 days in the hospital before I finally got mad. My obstetrician never came back to check on me in the hospital even though I had a C-section and I demanded a second opinion on her heart condition in case the cardiologist was biased against children with Down Syndrome.

I insisted on leaving the hospital early with my daughter because I wanted as much time as possible with her and especially because I realized that I needed to research Karen’s heart condition to effectively advocate for her.

I joined the St. Louis Down Syndrome Association which helped me enormously, especially with my research and emotional support. Fortunately, it turned out that the initial prognosis was wrong and the cardiologist told us that Karen’s heart could be fixed with just one open-heart operation at age 6 months.

I was elated until the cardiologist told me that he would support my decision to operate “either way”, meaning I could refuse surgery just like Baby Doe’s parents.

I was furious and told him that the issue of Down Syndrome was irrelevant to Karen’s heart condition and that my daughter must be treated the same as any other child with this condition. I also added that if he were biased against people with Down Syndrome, he could not touch my daughter.

To his credit, this doctor recognized the injustice and because of Karen, he eventually became one of the strongest advocates for babies with Down Syndrome.

Unfortunately, I ran into other medical professionals caring for Karen who were not so accepting. One doctor actually told us that “people like you shouldn’t be saddled with a child like this” and another doctor secretly wrote a DNR (do not resuscitate) order against my instructions at the time. It was then that I realized that my so-called “choice” to save my daughter was really a fight.

Tragically, Karen died of complications of pneumonia when she was just 5 ½ months old and just before her scheduled open-heart surgery. I will always miss her but I am so grateful that I was her mother. Karen changed many lives for the better, especially mine.

I became active in the Down Syndrome Association, promoted President Reagan’s “Baby Doe” rules ,  provided babysitting/respite for many children with various disabilities, and even got a chance to talk to then Surgeon General C. Everett Koop about setting up a national hotline for new parents of children with disabilities to find resources.

But most importantly, I was determined to find out what had happened to medical ethics  over the years since nursing school that resulted in the Baby Doe tragedy and hopefully help reverse the mindset that people with disabilities were “better off dead”.

What I discovered was a landmark 1979 book titled “Principles of Biomedical Ethics” written by Tom Beauchamp PhD, a professor of philosophy, and James Childress PhD, a theologian and also a professor of philosophy. Neither one had a medical degree.

They devised these four principles for medical ethics:

  • Autonomy – The right for an individual to make his or her own choice.
  • Beneficence – The principle of acting with the best interest of the other in mind.
  • Non-maleficence – The principle that “above all, do no harm,” as stated in the Hippocratic Oath.
  • Justice – A concept that emphasizes fairness and equality among individuals.

Although all these principles were considered equal, it wasn’t long before autonomy became the cornerstone principle in ethics and law, ultimately leading not only to Baby Doe but also to the legalization of assisted suicide/euthanasia.

Ironically, all these principles have been used to justify cases like Baby Doe’s as well as assisted suicide/euthanasia.

Beneficence and non-maleficence have become a ways to see death as an actual blessing to real, perceived or potential suffering. Ominously, the justice principle has become the rationale for rationing under the guise of supposedly not wasting scarce healthcare resources .

CONCLUSION

35 years after Baby Doe, some things like medical technologies and education for people with disabilities are better but many things like assisted suicide/euthanasia have pushed the ethics of death even farther and are a threat to all of us and our loved ones.

The Baby Doe tragedy should have been a fire alarm for the evils we see today but it is never too late or impossible to try to promote a culture of respect for all lives.

An Interview with an Assisted Suicide Doctor

It’s not often that we get a glimpse into the assisted suicide movement from the perspective of a medical professional who actually participates in terminating the lives of the terminally ill. Most seem to prefer anonymity.

But in a fascinating American Society of Clinical Oncology Post interview Examining the Impact of ‘Death With Dignity’ Legislation”, oncologist Charles D. Blanke MD, FACP, FASCO talked not only about his recent medical journal article “Usage of Oregon’s Death with Dignity Act” but also his surprises and concerns about the almost 20 year old Oregon law.

‘SURPRISING FINDINGS”

When Dr. Blanke was asked if anything had surprised him about the findings in his article, he replied

“I was a bit surprised by how rarely the prescribing or consulting physicians refer patients for a psychiatric consultation. According to our study, only 5% of patients received these referrals. In national surveys, many psychiatrists say that depression among terminally ill patients would disqualify them from participating in physician-aided death.

I was also surprised to learn how rarely a physician is present when the patient takes the medication—in only 17% of cases is that so. My guess is that physicians aren’t asking what their patients would prefer, because when I’ve asked my patients if they would like me to be present when they take the medication, 100% say “yes. (Emphasis added)

When asked about the spike in the numbers of lethal prescription in the last two years of his study,  Dr. Blanke replied that:

“There are several factors, including greater national awareness of this issue and the fact that there are several other states now with this legislation in place. Also, some of the medical societies that formerly opposed the law, such as the American Medical Association, have softened their stance and agreed to study whether they should be neutral on physician-assisted death.” (Emphasis added)

Note: Actually, the AMA has not officially changed it opposition to physician-assisted suicide although assisted suicide supporters hope for this. However, the American Society of Clinical Oncology has taken no official position on physician-assisted suicide, which is actual neutrality.

PALLIATIVE CARE, INFORMED CONSENT AND CONSCIENCE RIGHTS

Sadly, while Dr. Blanke says he is a big supporter of palliative care, he went on to also state:

“However, I strongly feel that there are some patients you simply cannot palliate. They have concerns about their quality of life and their ability to do the things they enjoy, they are suffering relentlessly, and they want to take back some control over their life. Physician-aided death not only doesn’t cause harm, in my estimation, it can give people that extra bit of control over their life, including the 33% of patients who fill the prescription but never take it. Just having the prescription on hand gives patients an immense feeling of control and comfort. (Emphasis added)

On informed consent, Dr. Blanke does acknowledge that:

“There certainly is worry that a family member might push the medication on a patient because of financial concerns, but that scenario is harder to measure. Rarely, you do get a sense that there may be some outside pressure on patients to take the medication” (Emphasis added)

Instead, Dr. Blanke says that in his experience, it usually is the patient who wants the lethal overdose and the family members who oppose it.  Ironically, assisted suicide laws do not require even notification of family members-at least until after death.

And on conscience rights for those medical professionals who refuse to participate or refer, Dr. Blanke  states that:

“Physicians have an ethical obligation—not to offer the option, if they are personally opposed to it—but to understand what the process entails, to be knowledgeable enough to explain to patients the pros and cons of their decision, and to refer them to a physician if they still want to pursue physician-assisted death….Sticking your head in the sand and refusing to take part at all during this critical time in a patient’s care does a huge disservice to that patient.” (Emphasis added)

Yet, responding to a question on the ethical or moral dilemmas assisted suicide laws pose for oncologists, Dr. Blanke states:

“We have patients who are suffering horribly, and we are helping to end their suffering, so I don’t see how that can be construed as harming our patients.

However, physicians are also faced with the reality of giving a patient a medication that is guaranteed to kill that patient, and regardless of your position on these laws, taking that action is very challenging for any human being, let alone a physician. ” (Emphasis added)

 

CONCLUSION

Over the years, I have seen some of my health care colleagues-like the general public-begin to tentatively approve assisted suicide in the usual polling question about a hypothetical case in which a person is terminally ill and in “unbearable pain”. (Ironically, Oregon’s law does not even mention “pain” or “suffering” as a necessary criteria to be approved  for assisted suicide.)

But I found there are very few fellow professionals who are actually willing to perform or even witness such a death. This is apparently why Compassion and Choices, the former Hemlock Society, also needs to provide help in finding doctors to write lethal prescriptions.

We must realize that there are no winners when assisted suicide is legalized-not the patient, the health care system, society or even the assisted suicide practitioner.

How Can Belgian Catholic Psychiatric Hospitals “Adjust” for Euthanasia?

I was in disbelief when I read Michael Cook’s article “Belgian Catholic psychiatric hospitals ‘adjust’ their view of euthanasia”.  I had to read the translated version on the Brothers of Charity order’s statement itself  myself to see if this was “fake news”.

Thankfully, Brother Rene Stockman, the superior general of the Brothers of Charity order, spoke out and said he was devastated by the news and then did three things:

“(F)irst we informed the whole congregation that as general superior we cannot accept this decision, because it is going totally against our charism of the charity. Secondly, we informed the Belgian Bishops conference about the situation and I am in contact with the president, Cardinal De Kesel. Also the Nuncio is informed. Thirdly, we informed the Vatican and all the information has been given to the Secretariat of State. In the meantime we continue to offer our clear arguments why we can never accept euthanasia.”

Brother Rene also warned that:

“In reality, only a few brothers are still involved in the government of the organization, so the majority are lay-people. Yes, there was a lot of pressure, but pressure doesn’t mean that we have to capitulate”

And

“Indeed, the presence of the brothers is not nearly sufficient, but also secularization is also poisoning the congregation in Belgium.”

Ironically, this comes less than 2 years after a pro-assisted suicide UK news service documentary titled “24 and Ready to Die” about Emily, a depressed young Belgian woman, was released but ended with the young woman changing her mind at the last moment.    Despite this, the documentary continued to support euthanasia even though one psychiatric “expert” who treated Emily was obviously wrong when she claimed that Emily’s suffering was so bad that it was “not compatible with life” and that her life did not have “sufficient quality”.

Emily is not the only one to change her mind. A 2014 Belgian study of 100 psychiatric patients  asking for euthanasia  showed that  “8 postponed or cancelled the procedure”. The study’s authors rationalized that these cancellations were “because simply having this option gave them enough peace of mind to continue living”! (Emphasis added)

Fortunately in 2016, the American Psychiatric Association passed a resolution opposing assisted suicide for the mentally ill.

Conclusion

As at least 3 European countries now allow assisted suicide for people with psychiatric problems and other countries like Canada are debating similar measures. Ethicists now write articles like ”Euthanasia for Reasons of Mental Health”  exploring the concept of including people with mental illness.

In the meantime, families like mine will continue to struggle with safety and treatment issues for our severely and chronically mentally ill relatives. We want real help for our loved ones, not assisted suicide or euthanasia. It is not compassionate, supportive or humane to have our loved ones “put down” like dogs.

Health Care Bullying Over Conscience Rights

Years ago, some of my fellow nurses were talking about assisted suicide and two of them supported physician-assisted suicide. I asked if they were comfortable with participating in an assisted suicide. Both were shocked and said no.

They believed the myth that doctors just write lethal prescriptions that patients then go home and take privately. It never occurred to them that they could be involved if the assisted suicide occurred in a healthcare institution, home health situation, etc. where they-unlike the doctor-could not just walk away.

These nurses were unaware that there were already nursing journal articles like “Assisted Suicide: What Role for Nurses?”  (2000) that quoted one Oregon hospice administrator:

“Initially, when the law was designed, the assumption was that physicians would be the first ones to explore PAS with patients…but in reality, nurses are usually the ones in the line of fire.

While Compassion and Choices leaders now talk about “integrating” and “normalizing” assisted suicide in end of life care , this 17 year old article already stated that “Much of nurses’ roles lies behind the scenes long before the drama of PAS unfolds. Home care and hospice nurses actively help patients understand their rights, acting as advocates for those who are considering PAS.” (Emphasis added)

Now, two recent articles expose the lengths that assisted suicide activists will go to  legally bully health care professionals to participate in medically assisted suicide.

VERMONT

In an April 5, 2017 article titled “This State is Trying for Force Doctors and Health Care Workers to Give Patients Info on Assisted Suicide”, the Alliance Defending Freedom organization  filed a lawsuit against Vermont’s Act 39, arguing that

“Vermont’s Act 39 makes the State the first and only one to mandate that all licensed healthcare professionals counsel terminal patients about the availability and procedures for physician-assisted suicide, and refer them to willing prescribers to dispense the death-dealing drug. Act 39 coerces professionals to counsel patients about the ‘benefits’ of assisted suicide—benefits that Plaintiffs’ members do not believe exist—and in addition stands in opposition to a federal law protecting healthcare professionals who cannot participate in assisted suicide for conscientious reasons.” (Emphasis added)

CANADA

In a stunning March 28, 2017 Canadian Catholic Register article titled “Doctors being ’bullied’ over assisted suicide, legislators told at Bill 84 hearings” , doctors in Ontario, Canada spoke out about “being bullied, silenced and coerced in a pro-euthanasia environment which is forcing those who object to medically assisted suicide to provide an “effective referral” for patients who wish to die”. (Emphasis added)

Dr. Jane Dobson testified about the pressure she has faced: “If I don’t comply, I face fines and the possible suspension of my license.”

University of Toronto School of Medicine professor Dr. Maria Wolfs added that medical schools are facing pressure to “weed out students who might object to assisted suicide”. (Emphasis added)

Psychiatrist Dr. Janice Halpern testified that the policy is also “at odds with the subtleties of a psychiatric doctor-patient relationship and asked how long can a psychiatrist work with a patient “on finding their will to live again” before referring the patient for assisted suicide.

The Canadian Supreme Court legalized physician-assisted suicide in 2015 and as of the end of 2016, at least 744 people have died from physician assisted suicide with Ontario having the highest number.

One doctor who assisted the suicide of at least 40 patients in 2016 said that those numbers will increase “to the point of the Netherlands and Belgium because their laws are similar to ours, and that would mean about 5 % of all deaths.”

UNEXPECTED CONSEQUENCES

Ironically, there has been an unusual backlash in Canada.

According to a February 2017 article in Canada’s National Post newspaper , an increasing number of doctors performing assisted suicide are now saying “‘Take my name off the list, I can’t do any more”.  As the article states:

“In Ontario, one of the few provinces to track the information, 24 doctors have permanently been removed from a voluntary referral list of physicians willing to help people die. Another 30 have put their names on temporary hold.”

And

“The Canadian Medical Association says reports of doctors backing away from the act are not just anecdotal. “I can’t tell you how many, but I can tell you that it’s enough that it’s been noted at a systemic level,” said Dr. Jeff Blackmer, the CMA’s vice-president of medical professionalism.”

CONCLUSION

Groups like Compassion and Choices depend on assisted suicide being portrayed as a victimless and necessary medical intervention while, at the same time, they oppose conscience rights for ethical doctors and nurses trying to help and protect their patients and their professions.

However, it is hard to escape the reality that legally forced participation in medically assisted suicide damages the health care system, health care providers and even patients.

Why Physician-assisted Suicide Cannot be a Civil Right

Although groups like Compassion and Choices insist that assisted suicide is a civil right despite the 1997 US Supreme Court unanimously finding no constitutional right to assisted suicide,  this is a recipe for disaster.

Civil rights means equality under the law so equality in assisted suicide means that the “right” to assisted suicide logically cannot remain limited to just mentally competent adults with a prognosis of 6 months and able to give themselves lethal overdoses by mouth. What about the non-terminally ill person with paralysis who can’t take the lethal overdose by himself or herself? What about the person with Alzheimer’s who is no longer mentally competent to make the decision for medically assisted suicide? What about the lucid chronically mentally ill person who wants to end years of struggling?

It is inevitable that assisted suicide as a civil right must necessarily expand to anyone using any prescribed method for any situation deemed intolerable.

We have already seen this happen in European countries like Holland and Belgium as well as the current lethal injection assisted suicides in Canada and now even paired with organ donation.

ECONOMICS AND BURDENS

A recent Canadian study predicted that physician-assisted suicide could save Canada up to $139 million dollars each year.

The study’s author states that “Neither patients nor physicians should consider costs when making the very personal decision to request, or provide, this intervention” but the reality is that people, especially older individuals, do worry about being a financial and/or physical burden on their families and almost 50% of assisted suicide victims in the latest 2016 Oregon report cited “burden on family, friends/caregivers” as a concern.

I am not surprised. My own mother often told me that she never wanted to be a burden on her family even before she developed Alzheimer’s and terminal cancer. Mom thought she was just being a loving mother without realizing that such an attitude and statement can have lethal consequences even outside of assisted suicide.

For example, years ago when I worked in oncology, I cared for a delightful elderly woman with cancer whose doctors recommended another chemo treatment. My patient confided that she did want to try it but feared becoming more of a “burden” on her daughter’s family with whom she lived.

I told her that I had just spoken to her daughter the day before and the daughter told me how grateful she was for her mother’s presence and help. For example, the daughter said that since she and her husband both worked, they were relieved to have the mother there for their school-age children when classes ended. The daughter told me how the children loved climbing into bed with grandma and telling her about their day.

My elderly patient was almost reduced to tears but by this revelation but then she laughed and admitted that sometimes she fell asleep when the children were talking to her.

I told my patient that whatever else she needed to consider before agreeing to the chemo, fear about being a “burden” should be eliminated.

CONCLUSION

People with disabilities are especially right to be concerned about the coercion of economics and perceived “burdens” of living when assisted suicide is legalized.

I learned this first hand when my daughter Karen was born with Down Syndrome and a severe heart defect. Even though I insisted that my daughter be treated the same as any other child with this condition, I was shocked by the responses of some fellow health care providers.

One doctor actually said that “People like you shouldn’t be saddled with a child like that”.  I was shocked and challenged him that, since my husband and I were medical professionals and especially able to care for a child with a heart problem and Down Syndrome, exactly who were these “right kind” of parents? Apparently none.

Later on, when Karen was secretly made a Do Not Resuscitate while hospitalized for pneumonia because I was supposedly “too emotionally involved with that retarded baby”,  I was shocked to how easily choice can indeed become an illusion when it comes to people with disabilities.

Unfortunately, it is a very small step from “I wouldn’t want to live (or have a child) like that” to “no one should have to live (or have a child) like that”.

Legalizing the demand for medical professionals to help end the lives of only certain people cannot be a true civil right or ultimately  even limited to “just” the mentally competent terminally ill.

Good News for Now

 

After sending written testimony to the Hawaiian health committee considering a physician-assisted law, I received the following email from a nurse:

“Hallelujah! The measure is deferred and will not become law in this session…. The testimony opposed (to assisted suicide) was very passionate. It really became clear that although Hawaii tends to be a very liberal, democratic state, the people are much more life-oriented than folks in Washington, Oregon, and the Netherlands. To hear a Native Hawaiian kamaka alii testify her opposition in the Hawaiian language was beautiful. I learned of even more reasons to oppose assisted suicide, and the legislators now have a long list of the flaws in this measure. The testimony changed the hearts of some committee members that were in support of the concept, but now seem to appreciate the risks.”

The bill failed despite public polls showing 80% support for assisted suicide.

Compassion and Choices as well as a lot of other people really thought this bill would make it out of committee but facts and passionate efforts seem to have made the difference!

In additional good news, a physician -assisted suicide bill in New Mexico also failed in the state Senate  by a vote of 22-20 .

Also,  legislation to legalize assisted suicide looks to have suffered final defeat this year in Indiana, Mississippi, New Mexico and Tennessee.

Of course, this will not stop the well-funded Compassion and Choices organization that will continue to reintroduce such legislation-often even yearly -in states that have rejected such laws in the past. Assisted suicide activists hope that their relentless public campaigns and the routinely positive mainstream media coverage of assisted suicide will sway more and more people to support assisted suicide.

With such support, Compassion and Choices can then even bypass state legislators and courts that usually study such bills more closely and just get assisted suicide passed by state voter referendums.

This happened in Colorado where assisted suicide bills were defeated in the legislature for 20 years until the strategy was changed to a state voter referendum placed on the ballot in 2016 that then passed.

Is your state at risk of legalizing assisted suicide this year?  Death with Dignity has a map of all US states and their status on assisted suicide as of March 28, 2017– although it does not include the failures in New Mexico and Hawaii yet.

In the end, ongoing public education about the factsthe very real “slippery slope” and the dangers to society and our health care system from legalized assisted suicide can not only defeat the pro-death movement but also spur a renewed commitment to the life and well-being of every person, especially those who are seriously ill or who have disabilities.

That is a goal worth fighting for!

 

 

 

My Oral Submission to the New Zealand Health Committee Regarding Physician-assisted Suicide on March 5, 2017

As a nurse and legal consultant in the USA with 47 years of experience in the most challenging areas of medicine such as critical care, oncology, burn unit and hospice, I have seen many of the most challenging cases in medicine. I also have professional and personal experience with suicidal people, including my own 30 year old daughter Marie who died using an assisted suicide technique that she found searching the internet and after a 16 year struggle with drug addiction. I have worked with many suicidal people, including some with terminal illness. To my knowledge, my daughter was the only one lost to suicide.

I have previously submitted written testimony about physician-assisted suicide and I would like to follow up with two crucial issues that I feel must be addressed.

First I will discuss how physician-assisted suicide empowers doctors, not patients. Second, I’ll share a nurse’s perspective.

1. Physician-assisted suicide empowers doctors, not patients.

Society has long insisted that health care professionals adhere to the highest standards of ethics as a form of protection for society. The vulnerability of a sick person and the inability of society to monitor every health care decision or action are powerful motivators to enforce such standards.

However in physician-assisted suicide, unlike any other medical intervention, any licensed doctor of any experience or specialty is granted immunity from “civil or criminal liability or professional disciplinary action for participating in good faith compliance “with an assisted suicide law[1].  The doctor or doctors involved are the ones to decide whether or not the patient is eligible, not the patient.

All the doctor is required to do is fill out a prescription and state forms. The usual standards for caring for a suicidal person including  intensive management[2]  are changed in physician-assisted suicide to “If, in the opinion of the attending physician or the consulting physician, a patient may be suffering from a psychiatric or psychological disorder or depression causing impaired judgment, either physician shall refer the patient for counseling.”[3] (Emphasis added). Not surprisingly, only 3.8% of people using physician-assisted suicide in Oregon were referred for psychiatric evaluation in 2016[4].

This is dangerous medical discrimination in treatment standards for suicidal people.

In addition, since the doctor is not required to be present or examine the patient after death, any complications or other problems must be self-reported by the doctor to the state. Even the death certificate must be falsified to report the death as from natural causes rather than the lethal overdose.[5]  This violates the standards set by the Centers for Disease Control which require accuracy because, among other issues, “The death certificate is the source for State and national mortality and is used to determine which medical conditions receive research and development funding, to set public health goals, and to measure health status at local, State, national, and international levels.”[6]

The  immunity protections and the secrecy of even the minimal self-reporting standards in US assisted suicide laws eliminates the possibility of future potential lawsuits or prosecutions and keeps the myth of “no problems, no abuses” alive.

2. A Nurse’s Perspective

The dangers of the legalization of physician-assisted suicide are especially acute for us nurses. Unlike doctors, we nurses cannot refuse to care for a patient in a situation like assisted suicide unless another willing nurse can be found which can be impossible. If we do refuse, that is considered abandonment and cause for discipline and even termination. And we are necessarily involved when the assisted suicide act occurs in home health, hospice or health care facility even though the prescribing doctor is not required to be there.

And these deaths are not guaranteed quick, painless or even possible in some circumstances. As a new December 21, 2016 Kaiser Health News article revealed, doctors are trying new drugs because the old drugs are becoming too expensive and taking too long to work. Unfortunately, some new alternative drugs have “turned out to be too harsh, burning patients’ mouths and throats, causing some to scream in pain”.[7]

Like most nurses, I have worked over the years with a variety of doctors who are at various points on the spectrum on competency and integrity.

Years ago, I was threatened with termination after I refused to increase a morphine drip “until he stops breathing” on a man who would not stop breathing after his ventilator was removed and no other nurse was available to take over the patient. The patient was presumed to have had a stroke when he did not wake up from sedation after 24 hours. I reported the situation up the chain of command at my hospital but no one supported me. I loved my profession and at that time, I was the sole support of three young children but I knew that nothing was worth betraying the trust of my patients.

I escaped termination that time but I refused to back down. Soon after, every nurse on a medical division of nurses refused to give an overdose to a patient and told the doctor that he would have to give it himself. The doctor cancelled the order.

Legalizing physician-assisted suicide can force nurses like us to leave healthcare, leaving no reliable safe haven for people who don’t want to end their lives.

Does anyone really want to entrust our healthcare system just to people who are comfortable with ending lives? I don’t.

FOOTNOTES

[1] “Oregon Revised Statute. 127.885s.01. Online at: https://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Pages/ors.aspx

2 “Evaluation and Treatment of the Suicidal Patient” . American Family Physician. Online at http://www.aafp.org/afp/2012/0315/p602.html

3 “Evaluation and Treatment of the Suicidal Patient” .American Family Physician. Online at http://www.aafp.org/afp/2012/0315/p602.html

4 “Oregon Death with Dignity Act Date Summary” .Online at https://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Documents/year19.pdf

5 : “Washington state “Death with Dignity Act”. Online at http://www.doh.wa.gov/YouandYourFamily/IllnessandDisease/DeathwithDignityAct/DeathCertificateInstructions

6 CDC Medical Examiners’ and Coroners’ Handbook on Death Registration and Fetal Death Reporting”. CDC. Online at https://www.cdc.gov/nchs/data/misc/hb_me.pdf

7 “Docs  In Northwest Tweak Aid-In-Dying Drugs To Prevent Prolonged Deaths” by JoNel Aleccia. Kaiser Health News. February 21, 2017. Online at http://khn.org/news/docs-in-northwest-tweak-aid-in-dying-drugs-to-prevent-prolonged-deaths/

Reports of My Death are Greatly Exaggerated-Again

In 2009, I began to get emails and calls from people who had read reports about the death of Nancy Valko from physician-assisted suicide in Oregon. Even our ages were almost the same.

After assuring people that I was not only very much alive but just as committed to opposing assisted suicide, I did a google search and found the obituary and information about another Nancy Valko who had planned and publicized a kind of party around her suicide.

Now almost 8 years later, I received an email from a friend who just read an article about the assisted suicide of Nancy Valko. I thought she had just run across an old article but she sent me the article “I will be dancing once again-Nancy Valko’s controversial final act brought her life, but not her legacy, to an end” from the current April 2017 issue of Woman’s Day, a well-known and long-running women’s magazine often displayed at grocery store checkout lines.

The article painted quite a  picture that was”carefully planned” by this Nancy : sunlight streaming through fir trees, bouquets of spring flowers, a manicured backyard and a friend playing classical music on a harp.

She was surrounded by her children and her former husband when she swallowed the lethal mixture. According to the article, her family continued to talk to her for the last two hours of her life telling her they loved her and praising her as an amazing mom.

The article notes that this Nancy was following a healthy lifestyle before she started have mobility problems and was eventually diagnosed with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease. In November 2008, she decided to move to Oregon to use its physician-assisted suicide law. The article states that she wanted to be around for her kids but she “knew that dying from ALS could be brutal-in late stages, sufferers typically remain mentally alert but lose the ability to move, swallow or breathe on their own.” She would eventually have to rely on family, friends or others.

By March when this Nancy started having more trouble talking and thus might not be able to swallow the drugs, she saw a doctor who determined that she was within 6 months of dying and able to swallow the lethal dose by herself. The article notes that “nearly everyone” in Nancy’s circle stood behind her decision to die and friends and family in other states “sent bubbles toward the sky” on April 19, 2009.

After Nancy’s assisted suicide, her older sister Marnie “was inspired” to fight for an assisted suicide law in Vermont that was signed into law in 2013.

The article ends with:

“Nancy wanted her life to matter,” says Marnie. “Because this legislation passed, it still does.”

A short section “The Case Against ‘Death with Dignity'” cites the American Medical Association’s opposition against assisted suicide but says that “it will revisit the issue”. The section also mentions that “some religions” like Catholicism and disability groups like Not Dead Yet also oppose assisted suicide but cite a recent Gallup poll showing that only around 40% of Americans now feel assisted suicide is “morally wrong”.

CONCLUSION

Why did Woman’s Day tell this story again after 8 years? It seems like a desperate attempt to show an assisted suicide as a happy party with friends and family celebrating while a loved one takes her life before, as the article states, there is a “loss of autonomy and dignity”.

I see this Nancy’s death as a sad tragedy of despair.

As a former hospice nurse myself, I felt privileged to be able to help people with life-threatening illnesses and their families achieve a peaceful and comfortable natural death. The traditional hospice philosophy of neither hastening nor prolonging dying allows a natural and truly dignified death that benefits both the patient and his or her family. Personally, these patients and their families inspired me with their devotion and love for each other. People should never feel that they are a burden to themselves, their families or to society.

Physician-assisted suicide is never the answer and I would never inflict it on my family and friends.